Taking every precious day as it comes

politics

I’ve always thought of myself as fortunate. Opportunities have landed in my path. My parents bought a house in the catchment area for a good school. My teachers saw to it that I got into a good university. That good education got me a job that I love. I have three beautiful children. My husband works hard so that I don’t have to choose between my career and spending time with my children. Childbirth aside, touch wood, I have never needed a night in hospital. I have not yet been reliant on benefits. We have been able to choose, get a mortgage for, and afford a deposit on, a perfect home in a stunning part of the world.

Comfy in his new buggy

Now we have Benjamin, still, we are fortunate. The healthcare he receives is second-to-none. He gets all the therapy in the community that he needs. All the equipment that he requires is also provided (albeit a little slow to arrive at times). He attends a wonderful SEN nursery and will attend a wonderful SEN school. He has a dedicated pair of support workers who keep him safe (and give him many, many cuddles) whenever I am not with him. Social care-funded agency carers help us for six hours a week, Benjamin gets two nights a month in a specialist respite care unit, and we have the support of our children’s hospice whenever we need it. Benjamin gets disability living allowance, we have a car through Motability and a blue badge. Our house will soon be adapted to suit Benjamin’s needs and the local authority will fund 80% of the cheapest option as quoted by the cheapest supplier; moreover, the work will should be completed by the time we really need it! Yes, we had to fill out some forms and write some letters. Yes, we had to dig around to find out what we were entitled to and we had to fight a little to get some of that. Yes, once or twice I have had to write to my MP and the local paper. But, generally, we get what Benjamin needs and what we as a family need. We are indeed fortunate, or so I thought.

Expert physio

Then, I started talking to other parents. Some families, in local authorities not too far away, get 12 hours nursing care a day. Some families get additional care in the school holidays. Some families received an automatic referral to psychological support to help them to deal with the trauma surrounding giving birth to a child with severe disabilities. Some families get twenty new syringes a day. Some families get liquid drugs so they don’t have to faff around crushing and grinding tablets to within an inch of their life to ensure they don’t block the feeding tube… I started to feel less fortunate. I started to feel jealous.

Then, I started talking to other parents. Some families’ only respite centre is being closed down. Some families have to self-fund essential equipment such as a suitable wheelchair. Some families can’t get a blue badge even though some days their child can’t get out of bed. Some families have to fight and fight and fight and go to court and pour every ounce of their energy and resources into fighting to get their child into a school that simply meets their needs. Some parents are forced to give up that battle, give up their career, and home-school their children. Some carers are carrying 50 kg children up and down stairs, or risking their backs lifting them into the bath because adaptations plans have stalled. Some families are crammed into a single room in a bed-and-breakfast because their local authority can’t find, won’t build, or refuse to adapt, a suitable property for their needs. Some children have seen half-a-dozen different paediatricians and never the same one twice. Some children have been discharged from all the services that might be able to help them. Some parents are accused of faking their child’s condition, or of poor parenting. Some are pushed so close to breaking point that they fear having their children taken away… Some families have their children taken away. I started to feel like the luckiest mother on earth. There, but for the grace of God, go I.

Why does it have to be like this?

Why do families at different ends of the same street, let alone different ends of the country, have to meet different criteria to get the same support? Why do families in very similar circumstances receive such vastly different levels of care (if any)? Why are we placed in these situations where we feel jealous, or guilty; where we have to compete? Why can’t there be a level playing field? Why isn’t access to support – health, education, social care, housing, advocacy – based on need and not on where you live, how deep you dig for information, how hard you’re prepared to fight, how well educated you are, who you know, who you can afford to employ, whether you are able to give up work, even whether you earn little enough to qualify for support (yes, it can work both ways)?

‘Why does it have to be like this?’ I asked Jenny Gilruth MSP at a recent round table discussion at the Scottish Parliament, Getting it Right for Parents of Children with Exceptional Healthcare Needs. She said I couldn’t expect everything to be centralised. But I’m not asking for provision to be centralised, I’m just asking for the rules, the criteria, the tick-boxes, the ‘decision making tools’ to be standardised. It could be as simple as saying ‘which area provides an example of good practice in terms of [insert essential service here]? Let’s employ their strategy across the board.’ How can it be so difficult to ensure, for example, that all children with continence needs should receive enough suitable continence products to meet their needs from the same age? Presently, some NHS boards provide pads from age three, others age five; some areas won’t supply pull-ups and others won’t supply cloth nappies; and some children get three pads per day while others get an unlimited supply. It should be as simple as every relevant organisation paying more than lip service to GIRFEC (Getting it Right for Every Child, in Scotland, or its English and Welsh equivalent Every Child Matters).

We might live at different ends of the country, but unlike some politicians, policymakers and bureaucrats, SEN parents do talk to each other. We know there are discrepancies, huge discrepancies. We share as much knowledge and as many tricks as we can to help each other out, to level the hideously uneven playing field we find ourselves on. We try to get around the borders that divide us and to fight as a team, while the system tries to make us compete to be the loudest voice clamouring for limited funding and limited support. We know it’s a postcode lottery, and we know it’s all our children that are losing out.

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This post was written for the #SEND30daychallenge, day 7: ‘Five things you’d change.’ We are so fortunate to live in Scotland, where there are really very few things that need to be changed so that Benjamin, and children like him, can live a safe, healthy, and happy life for as long as their biology and neurology allows them. Benjamin has many of the things that any child has a right to: shelter, food, water, sleep, love, healthcare, an education. He has these in abundance. But there are still things that Benjamin misses out on due to his special needs. Some of these are already changing; some of them need to change much faster. Here are the five things I would change for Benjamin at the moment:

Freedom from infection. Benjamin’s body – in particular his brain, stomach and lungs – is not as good at fighting infection as other children’s. If he gets a fever, it might cause a life-threatening seizure. If he gets a stomach bug, it can cause his entire digestive system to shut down and his pancreas and bowel to become inflamed. If he gets a cold, he frequently needs to be given oxygen to support his lungs. Any minor illness can put him in hospital for anything from one night to several weeks. Yet, still in this country parents flout the 48 hour rule that is designed to stop stomach bugs from spreading. Still, parents treat chickenpox as a minor illness. Still, people refuse to vaccinate their children, increasing the reservoir of infectious diseases to which Benjamin is subjected. If I could keep Benjamin in a bubble, I would. But that would not be beneficial to his growth and development, so I rely on other parents being responsible, thinking of others, putting childrens’ health above their convenience. The first thing I would change would be the culture that makes this so hard to do.

The ability to just pitch up and go on public transport. We have our car, which is great, but with a really fast rail link between us and our nearest city, it would be lovely to just be able, spontaneously, to hop on a train and go in to Edinburgh for a spot of shopping, to the movies, out to lunch, with Benjamin. Instead, we have to decide which trains we will be travelling there and back on – so no last minute decision to stay late – and book assistance and a ramp 24 hours in advance. So much for spontaneity! With trams and some buses wheelchair-accessible without assistance, it would be brilliant if our railways could move in that direction too.

Even this little train was more accessible than the East Coast mainline

Privacy and dignity when going to the toilet. Benjamin is nearly four years old, and weighs twenty kilos. He is still in nappies, and will be for the rest of his life. He is fast getting towards the limit of what a standard baby changing table will take, if not in weight then definitely in length. We are also getting towards the limit of what our backs can safely lift out of a wheelchair and onto the floor of an ‘accessible’ toilet – if we really wanted our beautiful boy to be laid on a place where people stand to pee, a place often wet, a place with too little space to kneel beside him, a place where most people wouldn’t even put their handbag! Yet few (less than a thousand in the UK) large venues, such as shopping centres, transport hubs, and cinema complexes, have something as simple as a changing place (a toilet with a bench and hoist), so we will soon be unable to use them with Benjamin. Our alternatives are becoming limited to changing him on the floor, changing him in the boot of the car, or allowing him to sit in his own waste. If we want Benjamin to have privacy and dignity, he’ll have to stay at home. In the twenty-first century, that can’t be right, can it? If you’d also like to see this change, please sign the petition here.

The chance to play with other children during the holidays. Benjamin loves going to his special needs nursery during term-time. It’s a brilliant environment, the staff are amazing, and he has friends there. During the holidays, all that is denied to him because the one-to-one health provision that he needs in order to attend nursery isn’t available. He’s stuck at home with me, which is boring for him and guilt-inducing for me! Across the country, the lack of suitable holiday provision for children with complex needs, or profound and multiple learning difficulties (PMLD) is sadly consistent. Children lose their stimulation and impetus, their friends and fun, parents could lose their jobs. Equality shouldn’t stop during the holidays.

Access to the natural environment. Benjamin loves to watch the sunlight flickering through the leaves in a woodland. He loves to feel the sea breeze on his face. We are fortunate to live near several beautiful beaches – but sadly very few are accessible to Benjamin (although there are now a couple of brilliant beach wheelchair schemes at the larger resorts). There are steep steps, narrow bridges, soft sand, and overgrown paths. I know we can’t expect to be able to take him everywhere, but I would one day love to be able to take him to the beach.

Maybe better wait until low tide though…

These are just a few of the things I would like to change – and that I think are changeable. The eagle-eyed amongst you will have noticed that I skipped the #SEND30DayChallenge Day 6: ‘A letter to the Prime Minister.’ I’m sorry, Ms May, but frankly, yesterday I was stumped. I had no confidence that you would be interested, no idea what would catch your interest, no concept of how to make you care. I feel we have more hope of achieving things at local level, through local politicians, lobbying nearby businesses, engaging local people and using social media. With my five things, I feel we have a real chance of change, from the grassroots up.

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In case you haven’t heard, we had a general election here last week. The result was rather unexpected and, for many people, disappointing, angering or downright frightening.

The way I voted is not important (I don’t mean because there were only two parties that could have won in my seat and I voted for neither of them; I mean that’s not what this post is about). What I want to explore is why I found it so difficult to decide how to vote. I don’t remember having this problem when I was nineteen.

Granted, the stances of the main parties were probably more similar than they have ever been. Granted, there were a couple of parties I would rather eat a black banana than vote for (and I really dislike black bananas. Does that make me a natural UKIP supporter?). Granted, none of the parties had a set of policies I agreed with in full, or even in large part. But these probably apply to most of the population.

What interests me is the fact that the older I get, the less decided I become. Do I vote on principle? On policy? To send a message? To stop someone else from winning? Because I’ve always voted for that party? Do I choose the best party for my family? My country? The world? For the short term or the long term?

I don’t think it’s just that I’m exhausted from chasing a three year old around all day whilst at the same time bottle-feeding Benjamin for all his waking hours. I don’t think it’s that my mind is befuddled from watching CBeebies and playing “Mummies and Daddies” (although it is somewhat confusing when Jackie announces that “I am the Mummy; you, Mummy, are the Daddy; Benjy is the big sister; and Daddy … Daddy can be Auntie Katherine”).

I think it’s that – call me late to the party, but – I’m starting to learn that the world isn’t black and white. That pure ideology just doesn’t cut it when you’ve got children to think about, and special needs children in particular. Pragmatism starts to come into it. Caring starts to come into it. Right and wrong are not always right and wrong.

I know, for my three-year-old, I need to set boundaries and I need to be consistent. But that doesn’t mean I need to make snap judgements and stick to them even when they’re not working. I need to learn to say “I don’t know,” when I don’t know, or “I’ll think about that and get back to you,” and make sure I do think about it and I do get back to her, rather than making hasty decisions that we’ll all regret in the long run.

Benjamin, too, thrives best on familiarity and routine, but if the routine we’ve relied on starts failing for him then I need to work, gradually, towards a better one. Nothing stays the same forever. With Benjamin, nothing stays the same for more than a few days…

So, if circumstances change, I just need to explain: “it’s okay to watch a movie this afternoon because Mummy’s poorly.” “We can have ice cream for breakfast because it’s all we’ve got in the house…” “Mummy was wrong.” Perhaps it’s a shame we can’t do that with the government… or perhaps we should be grateful that we live in a democracy stable enough to keep the same government for five years, and work with them, against them, and around them to achieve what we need to happen.

Does this mean I won’t eventually turn into (more of a) bigoted, cantankerous old woman? Who knows? In the meantime, I hope my indecision doesn’t make life too confusing for my kids, because it sure as hell is confusing for me (who were all those people who voted Tory…?).

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They say what doesn’t kill you makes you stronger … or at least turns you into your mother. After growing up in a highly politicised family I thought I’d finally escaped all that campaigning nonsense. However, if having kids makes us think and care more deeply about the world they are growing up in, and the world they will inherit, then having a particularly vulnerable child makes those feelings all the more profound.

One of my earlier posts has today been republished by the disability charity Scope as part of its 100 stories in 100 days campaign. Encouraged by Scope to seek my local parliamentary candidates’ views on what I’d written, I had to challenge myself, first, to think: what do I actually want to achieve through this? What do I want to change? And I found my ambitions have broadened even since I first wrote that post six months ago.

I still want to try and show that having a disabled child is not the end of the world. That the choice is not, as (perhaps unintentionally) presented to us, between Benjamin’s life and the quality of life of the rest of the family. Every new child changes the dynamics of their family completely the moment they enter the world. We will never know what life would have been like without Benjamin, or with a different child in his place, nor would I want to.

Sometimes I wish we’d never been given our choice. I live every day with the guilt that I have imposed the “burden” (whatever that may mean) of Benjamin upon my family. Because, whatever the positives, at some level I have made life more difficult for us in today’s world.

At the same time, knowing something of his condition before birth has been a great blessing for Benjy: it has meant the right healthcare, education and support has been there for him, and for us, right from the very start. Many are not so fortunate. Many have to fight for the recognition that their child has a special need. Then they have to fight again for the treatment, funding, equipment and support they need. They even have to fight to find out what they need, what is available, and what they are entitled to, because there is no formal mechanism for letting them know. There has to be a better way.

Anyway, what I mean, what I feel strongly is, that whether or not we actively choose this path, families who find themselves with a disabled child should not be made to feel that it is a life sentence. Yes, we need support, of many kinds. But we also need to be seen as a part of society, not as second-class citizens. People shouldn’t be crossing the street because they don’t know how to look at us or talk to us. Politicians should not be avoiding the issue. Humanity is simply a continuum of ability, after all.

I take Benjamin to two wonderful groups that I am lucky enough to have nearby. One is a small playgroup for special needs children, where the kids get to do developmentally-appropriate activities and the parents get to support one another, share information and swap tips. It’s invaluable. The other is a sensory and communication class, for neurotypical children, but run by a lady who is open-minded enough to let us join in, and even to let us stay way beyond the normal age if it is still proving beneficial to Benjamin. Although in some ways it’s hard to watch the other children grow, develop and move on, I’m sure this class also is mutually beneficial. The “normal” kids get to learn, from an early age, that disability is normal. And we, at least for an hour or so, get to feel part of the real world.

I guess I’m not really straying very far from my roots. I was brought up to believe that society should care for and protect those who can’t care for themselves, whether that’s a disabled person, an unborn baby, the elderly or the sick, and whether that care is provided through formal laws and taxes, charities, or simple community spirit. I’m not au fait with the economics, the laws, or the politics, but I do know that attitudes have got to change. It’s not only about accessibility; it’s also about acceptance, as a normal part of society, in which everyone cares for each other. I’m not saying I’m going to turn into an activist overnight, but I am going to start asking any policy-makers and opinion-makers I might meet, how they intend to achieve that.